In special needs parenting, you learn pretty quickly to give up on the standard ‘milestones’ that a child’s development is judged against, and instead start to create your own ‘inchstones’.
Smaller goals that may not mean much to the rest of the world, but are developmental achievements of epic proportion for the child. I have longed for an inchstone.
Just one little inch… Miss Z is a charming, beautiful, determined little girl, but her life has not been characterized with much of what could be considered progress. In some cases, we’ve seen regression, such as her loss of the ability to swallow effectively.
In other cases, her growing body has created its own obstacles for her. When she was a baby she could quite happily log-roll across a room, but these days, with a bigger – and still uncooperative – body, she finds it difficult to roll from her back to her tummy. She has been “on the verge” of sitting for several years now, but has just never mastered the skills of propping or balance in order to sit independently for more than a second or two.
Other skills seem to come and go on an almost daily basis.
One day, she will seem to intentionally use her iPad to communicate, the next she won’t even lift her hand to touch it. One day, she will shift her weight to anticipate a step in her walker, the next day, she will just dangle in the saddle, refusing to even bear weight through her legs.
I’d be lying if I didn’t say this was discouraging.
The day her Physio started working with her to teach her to roll over – when it was a skill she was so good at previously – was disheartening, even though I really, really want her to learn to roll over again. I feel jealous every time I see or hear another special needs parent talking about their child’s latest inchstone.
I want to feel that pride and achievement, too. The justification that all the hard work and therapy sessions have been worth it. And I have worried – a lot – that Miss Z won’t actually make any progress. Watching your child go through life and not develop any real and lasting skills was a frightening prospect.
It has been made harder because doctors always seem to be asking me “So, what is she able to do?” And I have no idea how to answer, except in the negative: she can’t sit, she can’t stand, she can’t talk… I try to mention areas where I think she has made progress – but they are often so ephemeral and have developed so slowly over time that they don’t generate much interest.
For example, she can cope much better now - without me or in noisy places or when being encouraged to do things she doesn’t want to do. She doesn’t scream and cry nearly as much as she used to. She is a more settled and happy girl…. most of the time.
I had very nearly given up on inchstones. Miss Z’s health has taken centre stage this year and the focus has been all about maintaining quality of life – not achieving new things.
So, imagine my surprise, when an inchstone suddenly appeared.
She can paint.
I was collecting her from school one day when her aide said “We did painting today and Miss Z loved it. She was very focused on her painting for nearly an hour”. And then she presented me with the results – which were beautiful.
They have done painting in class a number of times since, and Miss Z always enjoys it – and produces beautiful artwork.
I’m so proud of her that I haven’t washed the paint off the footrest of her wheelchair. I like this reminder that she loves to paint. I’m hoping people will notice it and ask me how it got there, so I can say “she was painting at school”.
It makes me happy and proud when she appears from her classroom with pink paint in her hair and green paint under her fingernails.
It may not be sitting or standing or talking, but it is Miss Z’s first inchstone and I couldn’t be happier.
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